What Comes Next?

Almost a month has gone by since my last post. Many things have changed and much has stayed the same.

I passed my licensure and am now a fully certified Psychotherapist. That's very exciting news. I passed on my first try despite the heat, a mask and a migraine. I felt and still feel a huge tidal wave of pride at that accomplishment. It also marks with a big period an enormous part of my life. Endless schooling, three degrees, 3,000 hours of practice, studying for millions of hours and now a framed certificate on my wall publicly declaring that "I DID IT!" 

What comes next?

That's the part that has changed very little.

I still can't function at all without my Botox shots for migraine every 3 months. Though by the end of month 2 it starts to wear off and then I'm a mess once more. Dizziness increases, pain, sound and light sensitivity, seeing things that aren't there, my memory gets even worse (which is really saying something!) You get the general idea.

Then there's the pain. The pain in my body is constant. I rarely take anything for it because I feel pain is the communicator. Sometimes that communicator is broken (like my migraines). But sometimes it's a valid message. I don't want to shut down that relay with my body just yet. 

But the number one ruler of my life is fatigue. When I become exhausted all systems stop. My memory, focus, ability to talk easily, train of thought, muscle strength, all go out the window. This happens daily, usually around 12-3PM. I rest and sleep and feel better when I get up. If I don't rest and sleep it gets worse till my muscles start to shake and spasm and I get cold sweats. 

When people say to me "Now that you have your license you can start seeing clients again!" I cringe. They have no concept of what goes on in my body. In their defense I also "fake normal" really well. "You can just see a few online" the friendly person might say. But that involves the ability to be there for the person 100% and many hours of record keeping, preparation, etc... I'm not just a face on a monitor. 

Therapy is out. 

So what comes next?

I'm essentially taking some time off to mull that over. I'm vaccinated and enjoying being social a little bit again. I'm looking forward to taking a few small road trips. You know... cutting myself a break!

For the future I'm considering a few ideas. Writing a mental health book is the first thing that comes to mind. Both an interventions book for clinicians and one for consumers. I like the idea of writing because I can do it anytime I feel up to it.

Right now I'm swimming often at my mother's pool. Trying to work out my CPAP machine. Attending appointments at my muscle clinic, my migraine neurologist and my regular doctor. Spending time gardening (when my body allows it), cooking (see previous comment) and hanging out with my ever-fun family.

We'll see what comes next.

Safety First

 

My motto for 2021 is going to be "SAFETY FIRST." And I'm going to start by postponing my licensure exam. My Mom and I had a good talk yesterday and she pointed out that with the COVID mutation in California and me being so high risk, it might be wiser to postpone. I completely agree.

Aside from risking death by taking a four hour test in a tiny, window-less room, my migraines have been awful. I'm not talking about head pain, although that happens sometimes too. I'm talking about being very dizzy, exhausted (not just fatigued) and my eyes being unable to focus. 

Luckily I have my every three month appointment with my migraine neurologist this Friday. But I'd like to get that more under control (if I can) before taking my big test. 

So this year I will go slow (I tend to be a big rusher) and take my safety seriously. I will advocate for myself and share more openly what's going on with my body. People only know what you tell them and I tend to not tell people much. Even those closest to me. 

I will also let others help keep me safe. That's a big one! 

Safety first.

Everything else second.

February - Where I'm at

I'm not kidding when I say I'm a full time patient. In one day I had three medical appointments. In one of them I learned the joys of what barium in all its forms tastes like for a Barium Swallow Test. 

(And why is the woman grinning madly? Why it's because she's trying not to vomit while holding massive amounts of barium in her mouth of course!)

Don't throw up or you'll have to do it all over again!

I also got to have this lidocaine nozzle shoved up my nose before a camera tube followed. Who knew they look at your throat through your nose? Now I sure do! (Kidding, he didn't "shove". He was very gentle and I'm being dramatic because I can.)

This was the petite nozzle that went up my nose. 

Only about 4 inches.

TAH DAH! My voice box and surrounding muscles. 

See the resemblance?

The tests all went well and they found some interesting things. Myopathy that affects my voice and muscles in the back of my throat that tire just like the ones in the rest of my body. They want me to see a speech therapist to get trained in some lung exercises to help protect me from pneumonia. I asked if I could just blow bubbles and pinwheels instead and the dude didn't even crack a smile. Doctors are just too serious sometimes!

So here's medically where I'm at:

• Referral for EMST (fancy for lung stuff) through a speech therapist
• Occupational therapy for my tweaked shoulder
• Occupational therapy to maintain muscle strength (even though strength isn't my issue, it's stamina)
• March 11th is my neurologist consultation for Botox for migraines (not the actual procedure. Hold your horses Ms. rushy rush! You have to be consulted first!)
• March 19th is when my wheelchair will finally get picked up for the modifications I've been trying to get since October (a higher headrest and knee abductors)
• March 22nd I check back in with my primary care doctor about everything
• Working on getting a nebulizer for home after needing urgent care and the hospital last year for breathing issues (mostly after travel)
• My teeth are clean, but I need a few procedures, so that continues in April

But what about FUN!? What's going on that's NOT related to medicine or illness?

• I'm enjoying the new show Lego Master with my honey
• My mom and I have a blast at our weekly Trader Joe's run
• I try and take Sweetie out every day, even if it's just around the block
• Daily I sit on my shower stool and pretend to be a mermaid while in the shower
• My husband and I are going to a Capitola beach house with friends in early April for the weekend
• My mom is taking myself and my son to Monterey during his spring break (one of our most favorite places in the world!)
• I just planted a little herb garden by my door
• The nature here is already springtime beautiful! I try and get out in it as often as possible
• I painted my toes rainbow and they make me incredibly happy

Back Breaking Work

My back MRI results came in very quickly. As for the MRI itself, let me just share that it was my second experience ever of having my back hurt so much that it went into spam. A 90 minute full back MRI is no joke. I used every self-soothing resource that I had in my big bag of tricks and still almost had a full panic attack (just from the pain.) I'll be avoiding those in the future as much as I can. But, the results were useful.

Always make yourself a "cheat sheet!"

My back isn't much worse than it was 17 months ago. The biggest changes were in my lumbar area. I have a fissure (that's new) and a "disk protrusion" that's hitting a nerve. That's coincidentally the most painful spot in my back. 

The results can be very hard to read, so I found "mapping it out" on a spine printout to be really useful. I'm not a doctor and always have to look up what all the words mean and turn it into English. Then it goes into my personal medical binder for future medical appointments.

The bottom line is that they found nothing that would explain my muscle weakness and muscle fatigue. That means it's likely not coming from back problems, but from something else (like RA?) 

This Wednesday I see a new neurologist, so hopefully she'll have some more insight into the mystery that is my body.

Any Questions?

"Do you have any questions?"
YES! 

What's wrong with me and how can we fix it?